What a long day.
We are beat. I think Harlie fared better than we did.
Our first appointment was in Pre-Op/Admitting at 10 o'clock. They did the basics - weight, height, temp and blood pressure. Then we spoke to a nurse at length about Harlie's history, current status, etc. After that, we spoke with an anesthesiologist. She asked why we didn't do a heart cath first. She was a little concerned about her cardiac situation. But I explained that it doesn't work that way. We don't have a choice. The hardware has to come out first. And we are here and Harlie is healthy. I don't know what's going on with her heart and lungs - but she is NOT sick. So, she sent us on to our next stop - admitting. Tom handled that one while I sat with Harlie.
It was noon by this point and we had an hour till our next appointment - cardiology. So, we went down to the cafeteria and got some lunch. There we ran into Julie, a nurse we used to have when we were at Children's National in DC. I saw her when we were here this summer, too. She moved to Boston and now works here. It really is a small world! Anyway, it was so good to see her friendly face!
After lunch, we headed up to cardiology. There she got an EKG, a pacemaker check and we met with her cardiologist who had us this summer. I find him to be very easy to talk to and compassionate about her and all we have on our plate. I brought him up to speed on what's been going on with her.
Unfortunately, the conversation wasn't great. We won't know anything for sure until she gets this darn heart cath. But, his thinking is that it is not likely to be a simple thing as a collateral vessel(s). He explained why and it makes sense. It also is in line with what her local cardiologist has said for years. Which means that her heart may not be the cause of the oxygen requirement. That will send us back to pulmonary, which means we have to go back to the beginning. That's where I started my questions last year. And we never got answers. She is just so complicated. Her heart function - the Fontan, is less than ideal, in a kid with normal lung function. Add her less than ideal lung function to the less than ideal Fontan function and what do you get? Plus, he said that she could be micro aspirating, which, over time could cause lung damage. So far, we've never seen any evidence of aspiration, but what the hell? I suppose she could be. Nothing about her makes sense, so why not? But, we've done x-rays, a CT scan of her lungs in June and we are now doing Vest treatments. I really don't know what else we can do. Except leave Richmond for pulmonary. Which I do NOT want to do. But, I will, if I have to do.
But, I'm probably getting ahead of myself. We have to take one thing at a time. But, for now, Tom and I are feeling very heavy. I don't want this to be a sign of something horrible. But, the oxygen requirement for almost a full year, the struggle her body had with surgery in July, and then again in August, the addition of Lasix to her daily routine, and then an increase of Lasix every other day, means that we are going in the wrong direction. Things are getting worse. And there's nothing I can do to stop it. I don't understand what's going on, and neither do her doctors. There's absolutely no comfort in that. And we have to wait at least SIX weeks for her heart cath! How am I going to live with this worry for six weeks?
After that appointment, we headed over to Plastics to see her plastic surgeon, Dr. Padwa. We didn't know how to get there from where we were. I know how to get to Dr. Padwa's office, but I have to start from a certain place. Anyway, we bickered about being lost, where to go, etc. And it was very obvious that we were feeling very tired, and sad, and worried and that's just the way all that stuff comes out - being crappy to each other because there's no one else to do it to. Luckily, we are not new at this, and we realize what's happening. So we stop it somehow.
We went to Dr. Padwa's office and met with her. That went well. No heavy conversation there. She thinks Harlie looks great. And things are so much more improved than when we saw her last. Harlie is swallowing and her mouth closure is much better. They got some mouth x-rays and some pictures. That sounds easy, but it wasn't. Keep in mind it was well after 3 o'clock by then and we were all so tired. And trying to get Harlie to look at us and hold still, etc. was a lot of work. And I can't even say we were successful. I don't know, maybe. They said she did well, but all I can tell you is that I was done. Then we went back towards cardiology to get chest x-rays. We would have done it while we were right there (they are next to each other) but, we didn't have time.
Here's what she looks like underneath it all...
You can clearly see the hardware in her jaw that will be coming out on Wednesday. Isn't it crazy? Oh, my poor sweet little girl. There is so much going on in her little body. It makes me so sad sometimes.
Here is a side view...
After that we were DONE. Luckily, her cardiologist didn't make her get another echo. And come 4 o'clock (it's scheduled time) I was so, so thankful. There is NO way she would have been cooperative for that. And Tom and I did NOT have the energy to help her through it.
We left the hospital after 5 o'clock. We walked those halls for seven hours, pushing her, and pulling her oxygen, both of us connected by tubing. Weaving through the halls, and waiting rooms, going into restrooms and exam rooms with that oxygen in tow is exhausting. I hate to sound like a wuss, but that oxygen changes everything. And I'd like to think I'm somewhat physically fit and energetic. Yet, it kicks my ass.
But, in those seven hours, we really never had to wait. And if we did, it was for a very short time. Our day in a nutshell:
1. Spoke with a pre-op nurse. Got vitals and discussed meds.
2. Spoke with a different pre-op nurse. Went over history and discussed meds.
3. Spoke with a pre-op anesthesiologist. Went over current issues and discussed meds.
4. Admitting, gave insurance info. That was easy.
5. Had lunch
6. Got an EKG, completed paperwork about her meds.
7. Got a pacemaker check
8. Met with her cardiologist
9. Met with her plastic surgeon
10. Got panoramic x-rays and various photos
11. Got chest x-rays
12. Realized Tom left his cell in Plastics, so he had to go back and get it
Walking all over the hospital and then discussing Harlie's history, meds and current issues, over and over again - is EXHAUSTING. But each specialty has to know that the information they are looking at is current and accurate. So, I get it. But, it's still exhausting.
Then we left the hospital and went across the street to get some coffee. Tom went in to order and I stayed outside with Harlie. Those are the things you have to do when you're lugging an oxygen concentrator around. Some places are just too crowded for our wide load. Anyway, while I was standing outside with Harlie, it took all my strength not to burst into tears. There was a girl standing there asking everyone who walked by if they wanted to discuss the Syrian refugees. No one wanted to, in case you were wondering. And I couldn't help but notice that I was standing just a few feet away from her, planted in my spot, and she never asked me. Funny. I guess she could tell that I had enough of my own problems to worry about. Then Tom came out and we walked back to the hotel. Tom went and got us dinner and we ate it in our room. Now we are waiting for the baseball game to start.
There is a lot on my mind tonight. But, somehow we'll get through. Harlie is happy and that's what's most important. She was so good today. She really is a good kid. And I don't know how or why. She has every reason not to be. For now, I thank God that she doesn't understand all of this.
Thank you for all your love and support. We are feeling it tonight, and we are so thankful. Also, I want to thank my neighbors, Jasmine and Soloman for having the boys (including Rooney) over for a sleepover with their son on Saturday night. And my sister, Sandy, for hanging out with them on Sunday and taking them to see a movie (coincidentally, Cloudy with a Chance of Meatballs 2). And Brandy for staying at our house on Sunday night and getting them off to school this morning. And, of course, Bethany for keeping the boys and Rooney this afternoon after school until Grandma and Pap Pap got there to take over for the rest of the week. Whew! It really does take a village...
Tomorrow is our day off and we are all looking forward to it! Thank you again!
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